Thursday, September 25, 2014

Does the disability define you?

For the last week or two I have struggled with my own mind, and in my own way tried to find peace with decisions that I make or do not make regarding my son's needs... I have no guru... I have only ME.

Does the disability, in our case, autism/neurological disorder, define me or us as a family? I asked myself that question,  and was faced with a very stark reality,  and an honest appraisal of my own naked truth.

The answer came to me some time on Tuesday of this week when I was totally alone with my thoughts. I gave this question my full undivided attention, which is something I don't usually do as I am generally multi tasking and overwhelmed with multiple thoughts.

The answer... the honest answer was  YES it does define me.  Yes it does. I admit that to myself.  I have created a sphere or a parallel universe that I glide in and out of that for certain defines me, directs me, motivates me, discourages me, depresses me, elates me and passionately influences me every single day in one way or the other.

I can never look at clouds the same way... I can never know truly what a quiet house sounds like, for as long as Andrew lives with me, it is never quiet. I can not know  what it feels like to simply grab a jacket and go... that easy slipping through the door feeling with one's keys in one's hands ready to race away... I cannot race away... there is no "away."  I carry autism with me every single minute of every single day.   It IS a part of who I am.

I have come to the realization that I have isolated myself these last few years for a reason, it was not accidental, it was not happenstance... it was an intentional guarding of my soul, to prevent real life from crowding in and asking questions: Are you happy? How do you do this?  Don't you want a life? You cannot do this forever? Isn't this too much for you? I could never do this.. I don't know you do this every day. Can't you put him somewhere?  The last question is my personal favorite.

Can't I put him somewhere - there is never a hint of where that somewhere is... who lives in that somewhere... who provides the care, love and support that I do... just a vague reference to "somewhere."

I found myself alternately alienated from people, repulsed or just depressed by their commentary. My comment to someone this week when discussing Andrew's very difficult set of circumstances and care needs that "Love is messy.. and love should be unconditional... do I say I only love you when it's easy? Or do I really love you all the time even when it is very hard...

I had to ask these questions of myself many times and still do. Could I put him "somewhere" sure wherever that somewhere is I am sure he is entitled to a free pass to gain entry. He is very disabled and worthy of a spot "somewhere" but then I ask myself who will sing Happy Birthday and mean it.. Who will look at his face if it is flushed and take the time to figure out if he is sick or has a fever. Who will watch his excitement when he rips his and everyone elses Christmas presents open? WHO lives in this somewhere with my son... ? I simply don't know and for right now I do not want to know.

I made a committment to him and more importantly to myself.. my own ethics, following my own moral compass for what is right what is wrong, and though I know that somewhere IS in his future as I have not determined how to live forever... It will be in MY time, MY way and MY choosing... not prematurely or rashly determined by the whim and pressure from society that coddles the "normal."

I know I don't control life and things could change that would force my hand... but for now autism does define me - it has left its mark - it has made me live in the present more than most people do... be present fully in each and every good moment and not take anything for granted.

I watch him suffer and also watch his joy... he loves clouds and so do I. I am compelled to  direct my eyes skyward and look with the same wonder that he does... he has taught me that.. live in the moment and revel in the most simplest times of joy.

Take time for joy...